14 replies to this topic

[Scottie]

First, thanks for all the messages, both posted and private. Now, not to be a whiny attention seeker, but after having CML for almost 4 years now (may 2007) I've been on Gleevec for a year, Sprycel for over 2 1/2 years and now I'm shoving the 800 mg. of Tasigna. I'm constantly at my oncs. office only to repeatedly get bad, badder and now the really bad news.

    I've been asked about siblings and their ability to test for HLa SCT. My only honest answer(because the wife was right there) was that none of them ever cared in the first place. Yes, people get sick. And yes, sometimes they look worse for ware. But of MY 3 sisters, only one ever calls to ask how I feel. Hey, I'm not a drama queen but at least they could show a little interest if not compassion. My wife is the only other person in my life. Yes, I told the Dr. I'd ask.

So I did quite recently. I obtained a 33% acceptance. Only one said yes. Another said"i can't right now. She just retired and is busy. The third never bothered to return my phone call. Hey, I look fine and I got all my hair. Yeah, sure you're sick Scott. Hey, one out of three ain't bad.

    

                  Peace to all of you out there,        even my sibs.

                                                                                               SCOTTIE.....

[porciniak]

<<hugs>>

I'm sorry that you're estranged from most of your family!  Thankfully though, we can pick our friends and that a sibling match is not necessary, h#$% they might not have matched anyway.

<<gus>> dj

[jrsboo]

That just plain sucks.  Yup, I said it.  That sucks. 

I am sorry that your family has treated you that way.  I am probably in the same boat, but only have one sibling. 

His emailed response to hearing that I had leukemia?  "Can I get it?"  And then nothing.  Even after hearing that if I need a transplant, he is the only one that might be a total match, there has been no response or offer of help.

So I feel your angst.

And it plain sucks.

Caroline

[lehrerin]

Scottie and Caroline,

I'm in the registry, and so is my husband.   Fingers crossed that one of us will match YOU!   People do care, you just aren't related to them

[Scottie]

    And all of my heart goes out to you folks. Thank you so, so much for being on the marrow donor registry. BUT how ironic. I too was on the donor list for @ 15 years or so. Hey-- go figure. Lifesource blood and marrow donor. Even when I told them of my 'Problem' they still kept calling and sending out letters.

They were a persistent yet welcome contact of mine.

Once more. Thank you for being donors. One day, you'll be happy to have helped someone.     Regards, Scottie..

[Marnie]

Wow.  As they say. . .you can pick your friends, but you can't pick your relatives.  When I was diagnosed and my mom started spreading the gossip in the neighborhood, parents of my old childhood friends came out of the woodwork to let my mom know that if I ever needed a transplant, they'd be there to donate.  There are good people out there everywhere, and you'll find your donor.  Maybe marrow is like money. . .you shouldn't borrow from or lend it to relatives anyway.

Good luck!

Marnie

[Trey]

Marnie,

I thought the saying was; "You can pick your friends, and you can pick your nose, but you can't pick your friend's nose."  I think that was from Hamlet, too.

[Marnie]

Well, darn. . .I should have read my Hamlet better.  Would have kept me from getting my wrist slapped when I reached for that greenie dangling from my best friend's nose the other night. . .

[jenn]

what do ou say to that ? Family can be many things,not only blood related.I have many people who I consider family that have no relation to me but are closer to me that my own family. Sucks that just love doesn't mean a thing when it comes to your blood marrow !!!!!

[everonward]

Hi Scottie

I can really understand your feelings on this one. I have one sister - I asked her to match as an insurance she wouldn't as she doesn't like needles. She then went on to compare my newly dx CML back in Dec 05. with her husbands self inflicted (heavy drinker and smoker) high blood pressure and how awful it was that he too had to take meds every day.   I rarely speak to her and don't miss her, My family are my husband and my children along with my friends.

Some people just aren't worth the effort.

\Hoping all turns out ok.

[rickpister]

You mean I am not the only one who has a family member (or members) who make you wonder what is going on in their head?  My mom had a beef with me around the time I was diagnosed. with CML (9/28/10).  She visited me in the hospital once with my dad and that's really been my only correspondence with her since that horrible September day.  She hasn't called me once but my dad informs me "she's always asking how things are going."  I guess it's too much for her to pick up a phone and call me.  On the flipside, I've had friends and a customer of mine whom I only met once offer to see if they were a bone marrow match. Go figure.  

[rickpister]

This thread is a horrible reality.  I guess we can take solace in having others around us to give us a boost.

I've said it before, I am really glad I found this place and everyone here.

Rick

[PhilB]

"You can pick your friends, and you can pick your nose, but you can't pick your friend's nose."

Sorry Trey, I'm afraid that isn't from Hamlet.  It's actually from the Journal of the American Society of Cosmetic Surgeons.  The choice of a nose is a deeply personal one and should be left solely to the patient.

[everonward]

"You can pick your friends, and you can pick your nose, but you can't pick your friend's nose."

he

I was under the impression it was from that well known Shakespearian play 'The taming of the Shart'